Thursday the 21st was the day the Dail turned to a debate on Duchenne Muscular Dystrophy. Fine Fail introduced their motion and it was carried 64 to 58 votes against a counter motion raised by Fine Gael and Labour.

The government motion did not address any of the items Duchenne Ireland have been raising over the past 4 years namely Adoption of Standards of care for Duchenne, registration of Ireland as a clinical trial site for Duchenne and adequate research funding for Duchenne, despite two votes in favour of such funding by the committee for health and children in the last few years.

The following counter motion was filed by Fine Gael TDs Joe McHugh and Andrew Doyle on behalf of Duchenne Ireland:

“That Dáil Éireann:

• there are currently at least 150 families affected by Duchenne Muscular Dystrophy (DMD), in Ireland today;
• DMD is the worlds leading lethal childhood genetic disease;
• there is no cure for this disease at present resulting in an average life expectancy of late teens and early twenties;
  

• Duchenne Ireland has raised over €300,000 nationally through a vast range of fundraising events which is to be allocated to translational DMD research;
• research, led by Professor Kay Ohlendieck, National University of Ireland Maynooth, has led to a promising new approach in the treatment of Muscular Dystrophy;
• in 2008 the Joint Oireachtas Committee on Health and Children unanimously voted in favour of supporting funding of Duchenne Research;

• to ensure that in the context of the deteriorating economic and fiscal environment that the National Disability Strategy will be implemented in full and that funding is invested to provide the essential health and community support services for people with disabilities, including those with Muscular Dystrophy and DMD;
• to prioritise adequate funding for Muscular Dystrophy and DMD Research through the Health Service Executive, and the Health Research Board, so to provide sufficient supports for sufferers but also to employ the most promising and innovative research strategies through the clinical trial process and to ensure that sufferers have access to these trials;
• to ensure there is a Care and Clinical Trial site in Ireland that is registered with the Treat-NMD clinical trials coordination centre and also to ensure that the new DMD Standards of care are fully implemented in this country.

Duchenne Ireland would like to thank the following TDs and Minister who spoke during the 90 minute debate in Dail Eireann last Thursday (21st May) Minister Moloney, James Reilly, Dan Neville, Denis Naughten, Jan O'Sullivan, Caoimhghin O'Caolain, Eamon Scanlan, Andrew Doyle, John Perry, Pat Breen, Niall Blaney, Jimmy Devins, Paul Connaughton, Joe McHugh and John Cregan.

Although the vote did not go our way we hope that Minister Moloney will carry through with the commitments he made to Duchenne Ireland on Thursday "Last November the issue became clear to me and the Tánaiste asked me to talk about meeting with the group and I intend, further to this debate, to meet with members of that group. I accept that request. I am not meeting them for the sake of it. That is not the position. It is a meeting to bring clarity"

We also would like to thank Muscular Dystrophy Ireland for using the event to promote their important agenda.  It is essential that the momentum gathered is maintained 

The full text of the Dail Debate can be found at the following link: www.kildarestreet.com/debates/?id=2009-05-21.145.0

This morning Fine Gael Deputies Joe McHugh TD and Andrew Doyle TD secured a Government commitment to hold a Dáil debate on Duchenne Muscular Dystrophy (DMD) - the incurable muscular disease that results in an average life expectancy of late teens/early 20s.

An Tánaiste Mary Coughlan TD agreed to facilitate a debate on the topic, following speeches during the Order of Business by the two Fine Gael TDs. The news comes as a massive boost to the 160 Irish families who are affected by DMD.

Commenting, Deputy Doyle said

"Currently no translational research and no clinical trials for DMD are being carried out in Ireland. Last November Deputy McHugh and I published a motion on the Order Paper on this subject, and this morning's development in Dáil Eireann is of great significance."

Deputy McHugh said

"Funding must be allocated to what is universally regarded as the most promising research strategies in order to accelerate drugs through the clinical trial process and to ensure that Irish sufferers have access to these trials. We are proposing that the Irish Government help to fund health research that is currently being conducted in the UK, because there is no adequate research facility in Ireland."

Last year the Oireachtas Joint Committee on Health & Children unanimously voted in favour of supporting funding of Duchenne Research, but the first movement by Government in this direction only happened this morning. 'Duchenne Ireland', a charity organisation, will raise €200,000 annually towards funding translational therapies for Duchenne.

An Tánaiste agreed to facilitate the debate, subject to the agreement of the various Party Whips in Dáil Eireann.

Article Cited from Irish Medical Times

Four members of Duchenne Ireland have recently met Tanaiste and Minister for Trade and employment Mary Coughlan. It was a very productive meeting where Duchenne Ireland outlined its position and this was well recieved .

The Tanaiste gave a commitment to investigate further some of our issues and would come back to us in due course.

Congress Passes MD-CARE Act Reauthorization

From our friend in the USA:

Most importantly, this victory is for the boys and their families. Passage of the legislation will continue to build upon the recent progress we have made, continue to drive important research at the Wellstone Centers, keep our issue at the forefront of attention at NIH, CDC, HHS, and other agencies, and continue to provide hope to one day soon find the cure and END DUCHENNE!!!!

Click here to read the press release

We congradulate the US people on working tirelessly to get this bill passed and we acknowledge that their funding of international research and best practices from this legislation will benefit our Irish boys with DMD just as much as US boys. DMD does not see international borders, it does not see politics, race, religion. It is indiscriminate, and so should Irish Funding for DMD research.

It's with disbelief that we in Ireland stand today in a paralel universe to our friends in the US . Our government has neglected DMD boys for far too long. When will Duchenne Muscular Dystrophy boys have legislation brought to pass in Ireland that will ensure therapies will continue to be researched and clinical trials continued to be supported for an eventual cure for our boys. What is Irelands Strategy for bringing an end to Duchenne?

We have, for more than just this week been in a recession in the DMD community with respect to Government action on this disease. It has been four years since our initial campaign to get the Irish government to fund DMD Research. Now is the time to face up to the hard facts that the Irish Government is responsible for finding therapies for boys with Duchenne Muscular Dystrophy, not the UK, not the USA alone but Ireland too as equals in this obligation. In a time of unprecedented number of pharmaceutical companies within Ireland and a constant urge by the government for inward investment into industry in Ireland, it is a poor representation of the Irish Government that nowhere in Ireland anyone is working on any legislation to ensure similar MD-CARE Act benefits are rightfully given to Irish boys with Duchenne.

We call on the Irish government to face up to their responsibility towards these boys and recognise that they have an obligation to fund research into rare diseases like Duchenne Muscular Dystrophy and that unanimous agreement from the Committee for Health and Children to fund DMD research (as was agreed earlier this year) should be the only requirement to have this acted upon. A Committiee is of no use unless it's recommendations are acted upon. Fund the correct DMD organisations or centers for excellence with adequate funding now into diseases like Duchenne to ensure research projects of internationally peer reviewed science are funded.

We call on the Government to act now and to see how Ireland can progress DMD research "internationally" to find therapies for our boys.

McHugh hits out at Duchenne 'insult' 30.06.08

THE plight of two Inishowen families living with a rare and fatal condition has reached the floor of Dáil Eireann. Three Inishowen boys suffer from Duchenne Muscular Dystrophy - Liam Mooney from Malin and Carn brothers Tony (7) and Bobby (2) Lafferty. The condition affects, on average, one in 3,500 males.
Last Thursday in the Dáil, Fine Gael Deputy Joe McHugh and his colleague Deputy Andrew Doyle called on the Government to find a way around regulations preventing the State from funding clinical trials. “Two families in my constituency who have three boys affected by DMD between them have been fundraising for the past month and have raised €70,000. Time is not on the side of these families as premature death is looming for their children.
"It is unthinkable that the Government is unable to find a way to help fund their participation in the research which they say is their only hope," said Deputy McHugh. Fine Gael has suggested a mechanism for the Government to fund the charity being established by affected families, Duchenne Ireland, if they are unable to directly fund the British trials. Both deputies condemned the Government’s response that it had provided €9,000 of National Lottery funding to the Muscular Dystrophy information day. The Fine Gael deputies described this sum as an "insulting response in light of the plight of the families affected".

Original Article thanks to Inisowen News: http://www.inishowennews.com/08DuchenneMcHugh.htm